CommunitiesBladder CancerWhy am I grieving the loss of my bladder before cystectomy surgery?

Why am I grieving the loss of my bladder before cystectomy surgery?

CB

Community Member

2 months ago

Getting a cystectomy next month with an illeal conduit at 39 years old and it's silly the amount of grief I feel over losing a body part that's been with me since birth. All I can do is cry 😭

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10 comments
Comment
CS

Community Member

2 months ago

It’s not silly and you are allowed to feel how you feel. I am deeply sorry that this is happening to you regardless of your age. All of this is hard to accept. I myself struggle with accepting my own path and treatments with all the side effects. I have a customer who has had one for 7 years and has no issues. It’s the mental thing that is the hardest to deal with I think. I might suggest watching some videos on it or even some tik tok people who have them. It makes it easier to understand and relate too then medical staff explaining things. At least it’s helped me. Just allow yourself your feelings and cry when you need to. God bless and you are in my prayers.

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CA

Community Member

2 months ago

The grief you're experiencing is completely normal and valid - losing any part of yourself, especially one that's been with you your whole life, naturally brings up complex emotions even when the surgery is medically necessary. Many people going through similar procedures find that acknowledging these feelings, rather than dismissing them as silly, is an important part of processing this major life change. You're not alone in feeling this way, and this community understands the emotional weight of what you're facing.

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CM

Community Member

2 months ago

I see a onacolgist on Tue and because of AI know removing my bladder is a real possibility. If needed I prefer that over the cancer spreading. Yes there are several videos on You Tube that have helped prepare me.

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MS

Community Member

2 months ago

My top tip: avoid belted pants. Elastic top, draw strings is much better. I am now 5 weeks post-surgery, finding it easy to go out. I'm using one-piece pint bag with night bag connector, no leaks.

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CM

Community Member

2 months ago

I've been wearing suspenders for almost a year now, just because they are comfortable.

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DW

Community Member

2 months ago

Hi, I understand you feelings whoke heartedly. I had a cystectomy, complete hysterectomy, 22 lymph nodes reed and an ilea conduit on June 10th last year. I had a rare cancer (Sarcomatoid Urethiel Carcinoma). I didn’ have much of a choice with treatment. The statistics relating to this cancer were not enough to determine a healthy positive outcome. The Ostomy bag isn’ that bad. I have my life which is al l that counts. I’m 71 and going to be a great grandmother for the 2nd time in October this year. I had a long 7 hour robotic surgery. It was scary I have never been hospitalized accept for the birth of my 2 girls. I wish you cancer free results and a happy future. I had a Pet scan recently after 4 infusions if Keytruda and I’m cancer free so far. I am having immunotherapy (Keytruda) every 21 days for a year making sure this cancer isn’t hiding somewhere. I am having side effects from Keytruda but they are being managed with an exceptional cancer team. You are so youn and Life is so worth the fight. Best of Luck to you.🙏🏻

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KE

Community Member

a month ago

Thoughts and prayers are with you my friend. I know all the best wishes don't sound all that great for you, but believe me, everyone is behind you, and you got this. Be cancer free and live a great life after this. God bless

MS

Community Member

a month ago

To Cody B: Ketruda caused a huge side effect in my case. The black box warning for rash/itch came true for 85% of my skin. Now being effectively managed with Dupixent.

GP

Community Member

a month ago

I'm stage 3 mibc, went through chemo treatment to reduce the tumor. Have appointment with new urologist surgeon on Tues 17 to plan on having bladder removal surgery, just don't know which urinary diversion is best

AH

Community Member

18 days ago

Your not silly. I too had my bladder removed I cried and cried still do to this day had my Surgery on January 6th. My thoughts and prayers are with you. Keep thinking positive.

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